Tips for Caregivers: How to Get Palliative Care for Your Loved One
How to get symptom relief and comfort for your loved one—and yourself.
Treating a serious illness can come with side effects that impact more than just the body. Symptoms can touch all areas of a person’s life, including the lives of their family members and friends.
Palliative care is a specialized medical service for people with serious, yet curable or treatable, conditions. The goal of palliative care is to help people with serious illnesses, and their loved ones, feel better physically and emotionally, and improve their quality of life. “Palliative care will help your loved one improve symptoms, have a better understanding of their illness, and help them make any decisions that they and you need help making,” says Nathan E. Goldstein, MD, a palliative care specialist at Mount Sinai in New York City.
Palliative care is available for patients at any stage of illness. It’s intended to help patients feel the best they can so they can get the treatment they need. “People who get palliative care will live years and years, and many people who get palliative care will actually be cured,” says Dr. Goldstein. Learn more about palliative care here.
To get palliative care for your loved one, talk to your doctor. Most of the time you have to ask your physician for a palliative care referral to get the services. Here’s what to ask at the appointment:
- Ask your doctor to explain your loved one’s illness and any past, current and future treatments and procedures.
- At the appointment, tell the doctor you are interested in palliative care for your loved one, and ask where palliative care is available in your area.
- Ask your loved one what quality of life means to them, and relay that to the doctor. This list may include: being able to spend time with loved ones; relief from any pain and other symptoms; having the ability to make their own decisions for care and where they want to be treated (in the home vs. in the hospital).
- Be sure the doctor is aware of any personal, religious or cultural beliefs, values or practices that are important to consider in care and treatment decisions.
- Talk to your loved one about what treatments they may or may not want, and tell that to the doctor.
“I think the most important thing that a caregiver can do is help advocate for patients. The healthcare system is very complicated, and when patients are sick it can be very hard to navigate through it. So one of the things that you can do is make sure that your loved one gets the help that they need,” says Dr. Goldstein.
If you or your loved one are experiencing symptoms and stress at any stage, talk to your care team about your options.
Nathan E. Goldstein, MD, is a professor of geriatrics and palliative medicine at the Mount Sinai Hospital in New York City.
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Palliative care is for your loved one,
if they have serious illness and or
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undergoing life-sustaining treatments or
treatments aimed at curing their disease.
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Palliative care will help your
loved one improve symptoms,
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have a better understanding
of their illness and
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help them make any decisions that they and
you need help making.
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[MUSIC]
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So palliative care can help your loved
one or family member in lots of ways.
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They may be feeling physical symptoms and
palliative care can help with that.
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They may be having emotional symptoms.
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They may be sad or they may be even
anxious about what's going on, and
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palliative care can
help with that as well.
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As a caregiver of someone
with serious illness,
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you may see lots of different
people on the palliative care team.
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The patient, the doctor,
and you the caregiver.
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And really it's the three
of you working together
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to improve the patient's disease
treatments, and quality of life.
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So your role as a caregiver is fundamental
and core to the patient's illness,
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and the treatments, and
the treatment plan.
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Caregiving can be a very stressful and
overwhelming experience.
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You might feel overwhelmed,
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you might feel helpless, you might feel
like you have no idea what you're doing.
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And that's a way that
palliative care can help.
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One of the things that we can do is help
you understand the patient's illness,
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help you understand your
role in their illness, and
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help connect you with resources
in your local community
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that will be able to help you so you can
better help yourself and your loved one.
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I think caregivers can ask doctors lots
of questions to make sure that patients
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are getting what they need.
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For example, what are these treatments?
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What are the side effects
of the treatments?
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How is she gonna feel when
she gets the treatments?
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How long will those symptoms last for?
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What medications or other treatments do
we have to help control those treatments?
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And what else can I do to help
my loved one get through this?
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Write your questions down.
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The most common thing when people leave
a doctor's appointment is they say,
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I meant to ask this.
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And so, write your questions down and
ask your doctor, or
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your patient's doctor all of
the questions that you have.
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I think one of the most important things
that a caregiver can do is really help
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advocate for patients.
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I think that the healthcare
system is very complicated, and
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when patients are sick it can be
very hard to navigate through it.
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So one of the things that you can
do is really make sure that your
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loved one gets the help that they need.
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What’s New In Palliative Care? UptoDate. (Accessed on November 29, 2018 at https://www.uptodate.com/contents/whats-new-in-palliative-care)
What Are Palliative Care and Hospice Care? National Institute on Aging. (Accessed on November 29, 2018 at 2018 at https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care)
Primary palliative care. UpToDate. (Accessed on November 29, 2018 at https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care)
Pain and Palliative Care. Clinical Center: America’s Research Hospital. (Accessed on November 29, 2018 at https://clinicalcenter.nih.gov/palliativecare/truths_myths.html)